I am a human in pain pretty much ALL the time. I have MS. I also have a fully coiled (with platinum) formerly ruptured cerebral aneurysm AT THE BASE OF MY BRAIN!
So, what’s my kryptonite? MY LEGS
Walking is a gift. I take multiple MULTIPLE drugs DAILY so I can JUST walk. That’s it. That’s the task. WALK.
So when I do walk… and walk in the heat… and walk for a length of time… I find myself NOT being able to walk like a normal…HA…NORMAL human being.
Today. Short but sweet visit to DLR. Plus a visit to Co. D. And a trip home with a LOOOOng ‘recovery’ nap. I have to use quotes because I DON’T really recover as much as wake up IN PAIN. Sigh.
OK. So here is MY personal version of MS. A: take copious amount of meds to be able to do normal things like walk. B: take those meds and other OTC meds (you know like Advil) to manage the pain I endure as my body says… wtf we didn’t authorize this stupidity (walking).
Walking after a day of trying to pretend I’m a normal human being… waddle waddle shuffle shuffle ow ow ow ow ow ow ow… yeah that’s the Cliff Notes.
So, walking. Yeah. A FUCKING GIFT! If you don’t realize how just being a normal human being and being able to walk from your couch to your bathroom WITHOUT pain and WITHOUT having to take 5 minutes to walk 5 FEET… yeah, you don’t realize how being normal is a gift.
THIS is WHY folks LIKE me NEED DAS. We CAN’T walk like normal humans. We CAN’T STAND like normal humans. If YOU have a NORMAL perfectly OK neurological system… YOU DON’T UNDERSTAND.
It SUCKS. A LOT! I used to be able to walk…. A LOT…. I would walk 10 minutes DOWN HILL to then walk and have lunch with my mom in DTLA. THEN…. WALK UPHILL….I KID YOU NOT… FROM the Regan Building on Spring and 3rd UP to 5th and Flower. JUST FOR LUNCH. Without a single problem….. Yeah, I HATE MS. I am no longer the human I once was. And it pisses me off to no end. That is why I take no crap from no one. Live my life. Walk in my legs and neurological system…THEN tell me you know what my life is like.
So yeah. I’m going to block your ass for being rude. I have every right to defend myself and to live MY LIFE AS I SEE FIT. You have NO RIGHT to step INTO MY HOUSE and think being rude is ok. MY page is just that MY PAGE!! DUH. READ AS MY FUCKING HOUSE. Do you go to a party at a house that is NOT yours and start being rude to the owner and expect to remain in said house? Yeah NO. THIS is MY HOUSE. I have NO PROBLEM saying YOU have NO RIGHT TO STAY HERE ANYMORE... buh BYE!
I’m in the beginning stages of SCA3, a heredity form of ataxia. I work nights (Friday and Saturday nights being the two nights a week where I make the most money, sometimes half my paycheck in those two nights for the week). Sometimes I don’t sleep well Saturday day (like 2 hours if I’m lucky) but still have to plug through my 11.5 hour shift. But, every Sunday we are at Disney! My legs are tired and sore from just sitting all night. Sometimes I get to the parks and they are on fire! We go slow and have fun. Well in June (on my anniversary, while my husband was in Spain visiting his sister) I fell. I have falle…